A VERY SPECIAL VISITOR

29th and 30th April 2010

For a change it was actually a beautiful Autumn morning on Thursday and for some reason when the weather is sunny and warm it makes you feel more bright and cheery. At school I had Australian Studies which I only attended one class of last Term, so it was all fairly new to me. We are learning about Governor Macquarie and I have an assessment piece to do with five questions about him. From what I learnt yesterday he seemed to believe that once a convict had served their sentence then they deserved to be treated fairly and respected however the free settlers did not like his attitude. The one thing I found difficult was the amount of writing in this class, you see I have difficulties with that and I also write much larger and slower than many people in my Grade, this is an effect from my tumour and the treatment. I should have taken my laptop with me, that would have made it easier, I will know for next time. After Australian Studies I then had double Mathematics, first of all we got together as a Grade and were told how the teachers expect us to set up our work in future. In my maths class we then did maths rotations, I got to do Battle Ships using a negative number ten by ten grid and then we rotated to do Mathletics. I now have another Bronze certificate, I only have one more to get and I will then have a silver one. I was so fatigued by the end of my day at recess that coming home in the wheelchair I dozed off.

We heard from the Head of Middle School and at assembly on May 11th I am going to present a speech about my book and book launch and then I am going to sell and sign books. The school supported us so much throughout last year with prayers, generosity and love and I am so grateful to them especially because the school community looked after Nalani and Jarrett when Mum and I were in Sydney. It was extremely difficult for them and they often felt really upset at school and found it difficult sometimes. I am hoping that many people in the Burgmann Community will purchase my book and read my journey because they were such an important part of it and by buying my book we are all working together to help research into Brain Tumours.

The Reverend who visits the Race Course also visited and he told me how in his sermon on the weekend he had spoken of me and how my attitude to life and my illness is inspirational, he said that some parishioners were crying at the end. He took a box of my books to sell as the people told him that they wanted to read my story. I feel so proud to think that I am inspiring people, I have said many times before I don't think I am special, I just want to help others in any way that I can.

The cold winds came up in the afternoon and my bones ached, I also had a headache that just throbbed in my temples so we were unable to do our training for Cross Country around the oval again. I am trying not to be disappointed about this but to be honest I am, next week I will try to be stronger.

I had some emails to reply to, started on some painting and made some delicious chocolate fudge brownies for our special visitor who was coming for morning tea on Friday. We also received a copy of The Canberra Chronicle and there was the most beautiful story about my book launch in it. I have been keeping all the articles and many other special items in a special treasure box so that I can look back on them when I am feeling ill or down and it will help my family remember me when I am not with them.

It was a damp, foggy Canberra morning but once the sun came streaming through the fog lifted to a glorious day. I was exceptionally excited because Mr Zed Seselja the Leader of the Opposition in Canberra and his Director of Electorate Affairs Tio Faulkner came to have morning tea with Mum and I. They were both so genuine and likable people and I felt very comfortable with them. We spoke about my book, the launch and I told them about my blister, my experiences in Sydney, Nalani and Jarrett, school, Tinkerbelle, relay for life and many other topics. I think they both really enjoyed my chocolate fudge brownies and Mr Seselja gave me a bunch of flowers they were gerbra's and he told me that they were his wife's favourite flowers. We took some photographs and I have put one on my Blog. He loved his signed copy of my book and I also gave him a special rainbow book mark that I had made. Having them visit made me feel very special and it was an honour to be able to talk to them.

After the visit I felt quite weary so after going and posting another package of my books I took it quietly by painting and then watching High School Musical 3. Tomorrow will be another special day because Gavin (one of the miracle men behind my book) and Gill his fiance are coming to visit us, as well as we have running training out at Stromlo and then are visiting my Uncle James and Aunty Kate.

I have been looking at my medical reports and handouts that I was given in hospital and I have found that the brain and spinal cord together form the central nervous system. Our central nervous system is the core of our existence as it controls our personality, thoughts, memory, speech, understanding and emotions, our vision, hearing, taste, smell, touch, our breathing, heart beat and blood pressure as well as how we function in our environment with our movement and balance. My tumour is a primary tumour which means it started in the brain, it is also the most malignant because it is a Grade IV tumour. It reproduces rapidly, has a bizarre appearance when it is viewed under the microscope and infiltrates widely. Medulloblastoma is always located originally in the cerebellum and it often spreads to other parts of the brain. Where mine was locatedwas close to one of the fluid cavities of the brain known as the fourth ventricle it extended into the cavity and blocked the cerebrospinal fluid circulation and also sent tumour cells to other areas of my brain and brain stem. Of all people living with brain tumours 23% are malignant like mine and only 1.7% of all brain tumours in everyone are Medulloblastoma however 15-20% of childhood brain tumours are Medulloblastoma but they occur more commonly in children under 8 and in a much higher percentage in boys. So I guess I am unique and I still strongly feel that I have been given this journey by God to go out and make a difference in other people's lives.

BACK TO SCHOOL AND PHYSIOTHERAPY

27th and 28th April 2010

After such an exciting school holidays with my book launch it was extremely difficult going back to school. It was an arctic Canberra morning as I headed off for my first day of Term 2. To my surprise not very much was mentioned about my book, I had thought there may have been a rush of people hoping to buy a copy of my book. At School the teacher told us the sort of work we are doing this Term, she also spoke about wearing the Middle School winter uniform correctly, I laughed to myself when she talked about girls who roll their skirts up and then how it makes them look silly because then the pleats stick out and gives them a big bum! We then had Science, we are learning about matter and how the universe is made up of particles. We are going to be working often in the science lab doing Chemistry experiments. That will be disastrous for me with my hearing difficulties as there are dreadful acoustics in the lab but you know me I never give up so even though it will be a huge challenge I will rise to meet it. We got some science homework and that was to do a title page for this term called 'What is the Matter?' Next it was time for English and our class went to the gigabyte cave to use the computers to practise some questions for NAPLAN, this is a national test for all students in Years 3, 5, 7 and 9 and will be held in week 3 at school. My last subject for the morning was Maths, we are learning all about directed numbers which I found pretty easy.

When I came home from School we received some totally awesome news and that was that our application for a house that has no stairs was successful - hooray! Maybe now I will be able to move about more easily in my wheelchair and to and from different rooms, it is also close to school. We will be moving at the end of May and now I can hardly wait.

I also heard that Borders Books would like me to do an in-store book signing to promote my book and help raise funds for Brain Tumour Research. The date that that is going to happen is Saturday 29th May in the Canberra Centre Store. It will be amazing to meet more people who want to read my book and will hopefully be inspired by my book. I think it is a wonderful opportunity also to thank people for supporting my book and my cause.

We went to running training in the afternoon and it was still shocking weather so I stayed in the car and signed some more of my books and did Sudoku. Jarrett was running the training session because his coach had a meeting, he was worried at first because he was the only boy and there were six girls, as a joke Nalani told him he could think he was Justin Bieber having all the girls run after him! I don't think Jarrett found this amusing because he does not think very much of him and neither does Nalani, Jarrett certainly would not want to be like him. He was relieved when one of the older male members of the squad showed up, they were still out numbered but at least there were two boys there.

Tess' brother in law Tass came to visit and he took two boxes of my books to sell at his work, he had already sold ten of my books, this is fabulous and I am so lucky to have people supporting me by selling my books in their work places.

I wrote a special poem to Gavin to help him feel a little better and I was over the moon to hear from him to say that he was coming to Canberra this weekend with his fiancee Gill. He also sent me an email to tell me that my book is in Insight Magazine.

I was in extreme pain in my right knee, ankle, hip and spine yesterday I think the weather is not helping me. Even though I took the maximum dose of panadol that I could in a day and used many hot water bottles nothing seemed to ease it and it seemed to get worse, my pain level reached a nine and a half out of ten. I had horrendous nights sleep and woke feeling like I had not slept at all however my pain had reduced to only seven out of ten.

Today I had physiotherapy which was a relief because I was hoping it would help ease some of my pain. Rhiannon loosened muscles and I even had heat treatment on my lower spine which felt sensational. Rhiannon then decided to help me try the slope outside physiotherapy, there is a bar there that I could use for support. Going up was not too bad but coming down was terrifying for me, I thought I was going to fall face first onto the ground, I am extremely off balanced. I did it twice and I felt like I had run a marathon. Afterwards my knee was throbbing but it was worth it I had reached another goal and that is what is important. I was then in pain for the remainder of the day but that is what I am used to now. I am beginning to think I will be living on pain killers for a long period of time. I am going back to physiotherapy in two weeks time in the mean time I just have to work on my exercises when I can because there will be days that I am unable to do any because of the pain and swelling.

We had a visit from our friend Manda, she worked with Mum and they are really great friends. Then we went to sign the lease for our new home. The property manager asked me if she could buy a couple of my books, she was buying one for herself and one for her mother for Mother's Day. I also went to the bank and got a cheque for the Brain Tumour Fund for $920 from the sale of my canvases at my book launch, I donated 100% of my sales to them in the hope that every little bit helps.

I promised you that I would include the special messages from The Master Chefs and Benji Marshall on my Blog, here they are:

The Master Chefs Matt, George and Gary said -

Dear Dainere,
Congratulations on becoming an author at such a young age! We can't wait to see the book, Gary and George are already teasing me about it being far better written than any of my reviews!!!

Also we are all so sorry that we can't be there to share your big day. We have to be overseas filming on the day but we'll be thinking about you!

Now off you go and join Julie's book in the best sellers list!!!!

Love
Matt, George, Gary and all at MasterChef.

Benji Marshall said -

Dainere

I just wanted to write you a message to wish you all the best for your book launch. Meeting you in Canberra was a very touching moment for me and gave me great inspiration for the season and for that game. You are a very strong person and so are your family, much stronger than us footy players will ever be.

I really wish I could be there to support your launch as I know you said I am your hero, but the truth is you are mine. You are a real inspiration to me and I'm sure an inspiration to everyone who knows you.

Good luck Dainere, I really hope it goes well.

Stay strong.

Benji Marshall xo

I am so touched by their words and will treasure them in my heart all my days. They have all inspired me on my journey yet they are telling me that I am an inspiration.

'Your light will shine more brightly in the world when you reach out to love others and then our world will never live in darkness'.

THE END OF SCHOOL HOILDAYS

25th and 26th April 2010

Yesterday I woke up with dreadful pain all down my right side, I also had pain in my left knee and ankle, I don't know what is going on! I am trying to stay strong and settle the pain with hot water bottles and panadol. Despite the pain I went to running training and we went for our usual lap around the AIS, I found that the lovely Autumn sun warmed my bones and eased some of the pain.

After we came home from running training I did sudoku and helped Mum and Dad chose some photographs to order from our special session with Luke the other weekend, it was so hard to choose because most of the photographs were grandiose! I also watched a DVD and it was Barbie Thumbelina, it must of made me exhausted because I fell asleep. I slept for over an hour and Mum gently woke me up to go to Church, in the Church bulletin there was a mention about my book, that was a tremendous surprise. From sitting in Church I found that my knee became stiff, stuck and deeply painful. So I went to bed with the same pain that I had woken up with.

Today I woke hoping to be pain free but tragically I was not, the pain throbbed through my right knee and ankle. However I did not want to waste the day feeling sorry for myself, remember I want to make the most of every beautiful day. Dad was at work because today was a race day, so we decided to go shopping for his Birthday presents, his Birthday is on the 7th of May. When we were at the shops a lady approached me and told me that she had been to Angus and Robertson to see if they had my book and they said it would be in within the next week or so.

I am now getting everything ready for going back to school, I am nervous but excited at the same time. There was some dreadful news that we received over the weekend and that was that Gavin who was one of the miracle men behind my book was involved in a motorbike accident, he has broken his jaw in several places. I have been praying for him and I hope for a speedy recovery because he is such a special person to me. Luckily he had that king sized meal at the lunch after my book launch because now he can only have sloppy food - Poor him!

Chris the ABC Stateline journalist has given me the direct links to the two stories they did and thought I would like to post them on my Blog so you can all watch them, Chris is another fantastic person and he told my story so beautifully. The links are: http://www.abc.net.au/news/video/2010/04/12/2870344.htm and http://www.abc.net.au/news/video/2010/04/23/2881751.htm

' You're unique and one of a kind, you can make your life what you want it to be by just taking one day at a time'.

BACK TO NORMAL

23rd and 24th April 2010

Following the build up to my book launch which was like living in a fairytale, the past two days have seen my life go back to normal. I will however never forget the wonderful experience of my book launch, what it meant to have my book published, to meet all the incredible people who were so enthusiastically involved and to know that through my wish I am going to be helping to make a difference today and into the future.

Yesterday I spent much of the day composing thank you messages by email and letter to the many guests at my book launch that placed their names in my guest books. In my letters I let people know that together we can make a difference for children with Brain Tumours and that the world is a better place because of it.

Jarrett had a sports massage appointment and I went with him and Mum to that. They really get into the muscles and I almost wished that it was me there, even though Jarrett was screwing his face up, he said it feels marvellous once it is done. We then had to call into the local shops for some milk and the girl behind the counter recognised me from the photograph and story in the Canberra Times about my launch from the day before, when we were out of the shop Jarrett commented that she did not say she recognised him - poor Jarrett!

I was still feeling tired yesterday, I think all the excitement has caught up on me, I also had terrible pain in my right knee again and when I tried to walk I actually lost balance and fell, it was a little scary but Mum grabbed me just in time before I hit the ground. My knee then swelled up hugely and I could not bend it. Mum iced it and rubbed it and told me to put it up so I watched a DVD called Hoodwinked. The swelling went down a little but the pain remained with a dose of panadol it improved slightly. I went to bed with it still painful and because of what had happened I was unable to do my exercises which I was so disappointed about. I guess you have to take the good days with the bad days and appreciate what you can do when you are able to.

We watched Stateline on the ABC last night because they did a follow up story about me, WOW! it was extraordinary, they used footage from my launch and the story was narrated by my speech, we all cried remembering the happiest day of our lives in a long, long time. Thank you to Chris and the crew for the way that they can tell a story so beautifully and with such a human touch.

The forecast was for a change in the weather overnight and it happened, I woke several times during the night in pain and feeling extremely uncomfortable and then I had that same nightmare that seems to haunt me mainly when I have a restless night sleep. Mum is always there though to comfort me the best way that she can, I am so lucky to have such a special Mum.

This morning it was drizzling rain and very overcast, the type of day that many people would say is a great day to just stay in bed. My knee is still painful but that is most likely because of the weather and I also have some pain in my lower back this is probably also from the cold. As the day progressed the rain became heavier and the winds whipped up, as I looked out at the bleak weather that blew all the delicate white rose petals off the bush outside I felt a little bleak also. It is funny how the weather can make us feel that way.

I brightened up though when the weather cleared a little and we headed off to watch Jarrett run in the ANZAC Day Relays at Campbell. Nalani was going to do them but she is still getting over a calf sprain. When we arrived at Campbell the winds had come up again and they had a real chill in them, I was so pleased that we were waiting in the car until the race started but I was well prepared because I had my scarf, beanie and a warm jacket on. I checked the temperature reading that we have in our car and it was only 14 degrees. The rain started to drizzle down again but just when the race started it stopped and I was able to get out of the car to watch. Jarrett was the second runner the distance for each runner was 3.68km and Jarrett was all fired up and wanted to run a good time. The first runner came in and Jarrett took off flying like the wind that was blowing. It was almost like he had wings on his heels as he ran the course and I cheered him on and he came in in the time of 11:54:00 which is a terrific time, in fact he ran the fastest time in his team. Then he was asked to be fourth runner for another team and again he flew and for his second time around he ran 12:07:00, his coach was impressed. So altogether today he ran 7.26km, he is amazing and I am so proud of him. As he was doing his warm down which is extremely important for a runner to do even though you often feel exhausted after a race this helps look after your muscles, anyway while he was doing this the rain started to come down again.

My knee is still very painful and it has now swollen up again, when I have attempted to walk again today my knees, particularly my right one have just buckled. So I am going to stay off it and hope that once they become used to the colder weather they will settle down for me. This is a little bit of a nuisance and I am hoping that it will not interfere too much with my preparations for the Cross Country and me trying to walk over the finish line. Even though I would like to walk 100m I am now thinking that if the weather is against me then I have to be realistic and even just to walk 10m would be a huge achievement.

As the rain is now pouring down and the winds bending the regal gum trees outside the house I am going to watch a DVD and have a lovely, warm hot chocolate with some whipped cream on top, I call it a Mummy special because she makes that for me to cheer me up and it is delicious.

Next Tuesday is back to school, I am looking forward to it and hope that I will be able to cope this term. I also wanted to let you know that I have now had 36 online sales for my book, that is fantastic and next week my book is supposed to be in the book stores then hopefully we can sell them out, raise more funds for Brain Tumour research and head towards a best seller!

I forgot to tell you all that after signing all those books at the book launch I had a blister on my finger, how fantastic is that? I think many authors probably get blisters when they are signing their books and perhaps it indicates just how many I had to sign and that is terrific, the more the better. Also I have placed some pictures from the launch on the last few entries of my Blog. As I think about it I have a smile on my face. See you can always find a way to blow away the clouds and let the sun shine in your life.

THE DAY AFTER

22nd April 2010

I woke this morning and felt a little empty, my book launch was over, it had all happened and it had been so magnificent but I did have one more wonderful thing to look forward to, seeing Tess before she returned to Sydney. She has been a marvellous, caring, extraordinary wish volunteer and I have become extremely close to her and I feel so fortunate to have met her. We are going to keep in touch with each other which I am so pleased about.

Tess arrived and we talked about yesterday and what a stupendous and magical day it had been then I gave her the signed posters for the the businesses that helped with my marvellous book, I hope they will really like them. Tess took a photo of me with the picture frame that Mark gave me of Benji Marshall and me, she is going to give it to Benji Marshall with the book that I signed especially for him. Tess' sister Gloria has a box of my books to sell at her work, Tess thinks that she will sell them in one day! It was then time for Tess to leave which was a really melancholy moment for me but I know that we will keep in touch forever.

We printed off all the online orders for my book and started to carefully pack them into the envelopes ready for posting. They have now all been posted in the mail box ready to get delivered and people should receive them shortly, it was so much fun and wonderful to be doing this today and I could not believe how many people had ordered my book from all around Australia.

This afternoon we had a telephone interview with Naomi from The Chronicle, Mum spoke to her first and then I did, she asked me some really excellent questions which I really enjoyed answering. I had to ask her to repeat some questions a couple of times because my hearing has been terrible today perhaps it is because I am a little tired as yesterday was such an enormous day. The story will appear in next weeks Chronicle, it is fantastic because it will continue to raise awareness about Brain Tumors, my special goal in life.

I played a game of Upwords and watched Cinderella II DVD with Nalani but Jarrett thought that was lame so he listened to his music instead. Life was pretty well back to normal today instead of living like a celebrity like I did yesterday.

My right knee became very painful and swollen this afternoon and then the pain went down into my ankle as well and then when we were at running training appreciating the glorious Autumn afternoon and doing our laps of the oval the pain began to shoot all up and down my leg and I was in tears. I had to take a pain killer to try to ease it but even now it still hurts and I feel extremely uncomfortable with it but by trying to keep busy I am hoping that it will distract me from the pain. Distraction is a great technique to use to help you through some difficult times and I have used it many times lately.

My eyes are drooping and I feel very tired, I will have my cup of tea and go to bed and hope that tomorrow morning I will wake up and the pain and tiredness will disappear.

Thank you for the many comments that you have placed on my Blog, I have felt so humbled by them and appreciate your gracious words. I so look forward to logging on and checking to see what you have said and please know it brings me hope, strength and a brilliant smile on my face.

MY BOOK LAUNCH

21st April 2010

A rainbow appeared in the sky yesterday in a kaleidoscope of colours after the storm and I think that was an omen of the many wondrous things that would happen today.

This morning I woke up and although I was extremely excited I had a mass of butterflies fluttering around in my stomach. I was a little nervous about the day and hoped that it would all go well and that people would love my book.

My launch was to be held at Thoroughbred Park at 10.00am so that did not give too much time for those butterflies to become much worse. As I slipped on my beautiful white, silky, fitting dress with delicate little flowers across the top and a tie at the back I felt like a princess. I chose my longest curly wig which I wore a rainbow headband that Tess gave me in my hair and put my fragile, sparkling silver necklace around my neck. The last thing was to put on my glittering, pink sandals upon my tiny feet. I had my fingernails painted in a deep pink nail polish in case they filmed my fingers when I was signing books. To finish off my outfit I had a lacy white shawl with rainbow coloured flowers scattered on it, finally I was ready. Theodore was dressed very smartly in his black tuxedo and I even combed his fur for the occasion, I was so glad he was coming with me.

A long white limousine arrived and it was time to head off for the biggest event of my short life. Jarrett thought he was a rock star as he sat in the seat and Nalani felt like she was famous and glamorous. The limousine driver took us for a little drive around before arriving at the venue, we were offered some non-alcoholic wine but I think we were all a little too anxious to have it at that time.

On arriving at Thoroughbred Park, I was greeted by camera's, some of the faces behind the camera were familiar and that helped me feel at ease. I took a deep breath after the media had taken the photographs they wanted and then we headed into the building and up to the Rich Reward Room which I have been told a few times may be good luck and will hopefully help me raise many funds for Brain Tumour Research.

We were greeted by Captain Starlight who played a ukulele as we were escorted to our place in the room as everyone in the room clapped. It was so overwhelming but so wonderful at the same time. Captain Starlight said a few words and then introduced a special treat for everyone which was Nalani. Nalani stood up and took a microphone and said that she was going to sing the song The Climb which she was dedicating to me. The music started and Nalani sang, she sounded so beautiful and halfway through it I felt like crying because it meant so much to me that she would do that for me. Even Captain Starlight had tears in her eyes and I think everyone there was totally amazed by how beautifully Nalani sang.

Captain Starlight then spoke about Starlight Day which is on 7th May and what Starlight do to help ill children and brighten their lives. Just like they granted my wish and organised the function to launch my book.

She then introduced Paul Gordon, he is such a determined and motivated man who started the wheels in motion to get my book to what it is today. He spoke with pride and thanked many of the other people who have passionately assisted in the whole process. I was feeling really choked up with what he said also that I was a real inspiration. He is such a special person and I am so glad that he has been part of my book and will always now remain part of my life.

After Paul spoke the leader of the opposition Zed Seselja spoke and his speech was wonderful and I could tell that he really meant every word he said and he wants to personally meet me in the next few weeks, which I feel very honoured about.

Then it was the amazing Tess' turn and her speech was very emotional and so heartfelt as she thanked many more people like David Furner and The Raiders, Short Stack, Luke the photographer, Greater Union and Benji Marshall. She also talked about how special I am and what I meant to her. Just before the end of her speech she said she had received three special messages, the first on was from Matt Preston from MasterChef, he said some really terrific things and I will get a copy of this and I will write it on my Blog so you can also read it. Next there was the most beautiful one from Benji Marshall who said he was inspired by me and that I was his hero, he is so unreal and with both these messages I could feel my throat tightened and my chest heave and I was very close to tears, so I took another deep breath. The last message was from the Honourable Prime Minister Mr Rudd and he also said that I am inspiring, the message is going to be posted to me. It is so wonderful that he also took the time when he is busy running our Country to think about me.

Mum and Jarrett went up to the microphone next and they did a fantastic speech also, I think my favourite part was when Jarrett at the end said "we love you Dainere". I am so lucky to have Mum, Dad, Nalani and Jarrett beside me and know that they are so proud of me and love me very much.

Then it was my turn, after so many beautiful speeches which had made me feel very emotional, I was a little nervous about doing my speech but because I wanted to thank the many people who have meant so much I found courage again within myself to do my speech. I think I did a really good job. This is what I said and it applies to any one that has been supporting me but was unable to attend my launch.

'You have to go through a storm to get to a rainbow. What does this mean to you? For me it is the story of my journey with cancer which is like a storm that blew into my life just over twelve months ago. Often the storm seemed to get worse but every now and then I had visions of a rainbow in the distance and that was a rainbow of hope for me.

When I was given the opportunity by The Starlight Children's Foundation, who grant very special wishes to children with serious illnesses like myself, I thought about it very carefully. I finally decided that I would like to have a book published about my journey and at the same time I also wanted to inspire and give hope to others, raise awareness about brain tumours and much needed funds for brain tumour research.

Now here we are today, it is like a dream come true but it would not have been possible without so many incredible people helping out so generously and enthusiastically along the way: Tess, my Starlight Wish Volunteer, my angel, who did not give up on believing that this was possible. Paul, Ben and Gavin who worked so passionately to see my book become a reality, they are the miracle men behind my book, Laurence who turned my simple Blog into this amazing book, Juliet and the Team at Murdoch Books for publishing and delivering my book, Carlos and the Focus Creative Team for their creativity, The Team at Geon for so generously printing my book, the wonderful Team at AXA who assisted in many ways and my Uncle James for creating my Blog to tell my story.

Sometimes our candle is blown out but glows brightly again when it is lit by the flame of human kindness, the media people like Jayne and the Channel Nine Team, Chris, Louise, Carol and the ABC Team, Natasha, James and the Team at The Canberra Times, Canberra FM and 2CC have all told my story so beautifully, they have helped raise awareness about my book and what I am hoping to achieve.

We are all given a path in our life, mine has not been easy but because of the love and support of my family and friends who I am so blessed to have around me, I have been able to find courage, strength and hope throughout my journey.

When you read my book, my special story I hope that it will touch your heart and make a difference to your lives like all of you here today have made to mine.'

I hope that you liked my speech, it took me a while to write because I wanted to make sure that I said what I really wanted to say and that it all came from within my heart.

After I did my speech Captain Starlight then officially launched my book and then everyone clapped loudly in the room. I had just a little time to say hello to some people that were there and I received so many fragrant and beautiful bunches of flowers and some lovely gifts which I am so grateful to those people who gave them to me.

I then had time for a toilet break before I had to sit at a table with Mum and Tess and Emila from Starlight for media questions but not too many questions were asked. I think everyone was waiting to get their books.

The que was massive and I began signing books, I had pre-signed some which was really lucky and helped me catch up a little. So many people gave me really positive comments about my book or wished me luck for my future. Many people bought more than one book which was wonderful and rather than $12.95 many gave a little extra this was so generous and kind and gives more to the Brain Tumour Fund which is just magnificent. The que gradually grew shorter as people bought their books. It was the most amazing feeling to sign the books and hand them to the wonderful people that were buying them. I had a warm and fuzzy feeling all over and I think I had a smile that would light up the whole of Canberra on a dark winters night.

I was auctioning my canvases also and was so surprised by the number of people that bid on them and now I am able to give the Brain Tumour Fund 100% of the funds from the sales of the canvases. The most popular one was 'You have to go through a storm to get to a rainbow' that is my signature motto that I live my life by.

I received a lovely surprise from my favourite Wests Tigers camera man Mark from Channel nine who had put together pictures from my day at the football with Benji Marshall. It was in a tall frame and as I looked down at the pictures it brought back the most wonderful memories of that special day. It is now sitting proudly in my bedroom and I will treasure it always.

We were then taken home in the limousine, on the way back we opened the bottle of non-alcoholic wine and had it in lovely glasses and Mum, Dad, Nalani and Jarrett all made a toast to me. We thanked the limousine driver who seemed very excited to have had driven me to my special event.

After that Tess, Paul, Ben, Gavin, Liam, Mum, Dad, Nalani, Jarrett and I went to lunch at Central Cafe. One of the staff asked me why we were dressed up and we told them and when they realised who I was they wanted to know if we had any books to sell as they really wanted one. Luckily Tess had some with her, so I was able to sign them and sell them there, I think I am a little bit of a celebrity now, that is pretty amazing signing books when you go to lunch! I had an iced chocolate for lunch as I did not feel like food. They serve really beautiful food there and they have different size meals. You should have seen the meals Gavin, Liam and Ben got they were huge because they asked for King size, Liam and Ben pretty well got through theirs but poor Gavin struggled. It was terrific having lunch and chatting to the people who have turned what was almost the impossible dream into an amazing reality. We had a fantastic time with them but then it was time for them to head back to Sydney. I felt a little sad, a bit like Christmas, you wait and then the event happens and then it is all over just like that. I gave big hugs to all of them and they said that they will always now be part of my life. I am so glad because they are just the greatest, most genuine and kind people I have met.

We then came home and I read cards that people had given me, one that really touched my heart and made me cry with happiness was one that Gavin had left for me, I have really touched his life and I am so glad that I could do that.

I signed some more books for Tess to take back to Sydney tomorrow and signed some posters for the offices of the people who were part of my book becoming a reality. I then watched the news and saw myself at my launch, I was filled with a happiness that is so hard to describe but it felt like a humongous hug.

Some people have asked where you can buy my book, well you can buy it online at http://www.dainere.com/ or follow the link at the side of this blog and it will take you to it or Angus and Robertson and Borders are going to stock it also.

I am now quite exhausted but feel like I have lived in a fairytale today and I hope that that feeling will last forever.

MY BOOK LAUNCH IS TOMORROW

20th April 2010

I can't believe it........tomorrow is my book launch.......my very own special story 'You have to go through a storm to get to a Rainbow'. I have a dream that it will inspire and give hope to so many people not only those that have cancer but to every day people also.

Today I made sure that I had as much rest as I could, I don't want to be too exhausted on the most important day of my life. I did an interview with 2CC as they are going to have it on their morning news so that people know that it is the big day of my launch. Chris Kimble also spoke to us and they are doing a short follow up on Stateline on Friday night, he is so nice I really loved doing my interview with him and he is so genuinely interested and concerned about me.

We are now about to go to running training, but we won't be doing our laps of the oval because we have to go and set up a couple of things for tomorrow and Nalani has to do a sound check because she is singing at my launch. Tess is going to be there and I am going to give her a huge hug, if she had not have persevered with what I wanted as a wish it would have never have happened. This is so important to me and to Brain Tumour research.

We are getting picked up by a limousine tomorrow morning, I think I will feel like a real star but it is not all about me it is my book and helping others. Theodore is coming also, he even has a tuxedo to wear!

Have to fly, we have to get to running training, Jarrett's coach is away and he has asked Jarrett to run the session because he knows what to do and is responsible.

It actually looks like it will storm, there has been some thunder, how amazing is that a storm and then hopefully tomorrow will bring a rainbow. I can hardly wait to share all the exciting news from tomorrow with you all.

ONLY TWO DAYS UNTIL MY BOOK LAUNCH

18th and 19th April 2010

It is now only two days until I can make a difference in a small way to people's lives with my book. I am so hoping that all the people that say they are going to buy it really will and I truly hope that they will be touched by it.

We should not take our lives for granted, we all need to make the most of each and every day and in some way reach out to others along the way. I am hoping that through my story people will want to help people who have cancer, especially Brain Tumours which you do not hear much about.

Yesterday I spent signing books for people who have paid such an important role in having my book become a reality. I also went to running training, it was a glorious Autumn day and all the beautiful colours in the bush really lift your spirits. We went out to DFO and I found a gorgeous necklace to wear with my dress for the launch. I rode the exercise bike for five minutes and have been able to tick off that goal on my physiotherapy sheet.

Today has been a very quiet day apart from grocery shopping because I have to get lots of rest ready for the big day of my book launch, I can hardly wait!

ONLY FOUR DAYS UNTIL MY LAUNCH

17th April 2010

Huge news Woohoo! Last night when I was having my cup of tea before bed, I received a very exciting telephone call, it was Dad and he put some very special people on the line who wanted to say hello. It was Short Stack, how amazing, awesome, terrific is that. Andy, Shaun and Bradie all spoke to me and they were so cool and really friendly, then Liam spoke to me also because he is the touring member with them and he was fantastic also, he said he is so looking forward to seeing me at my book launch. How kind is that of them to take the time to speak to me from their concert, I feel so lucky to have that happen.

Nalani had a fantastic time at the concert with her friend Catrin, they got to have photographs taken with them and then they got to go back later and talk to them. Nalani said they are so friendly and are the coolest guys ever. She loved their concert and felt they were just as fantastic live if not better than their album. She is still talking virtually non stop about it today. They signed her tee-shirt for her and she reckons she is never going to wash it, that could be a bit gross! They sent home a signed book for me and a Short Stack makeup set, which was so generous of them, I feel so special. Dad got to meet them with the girls also because he was looking after the girls, he really enjoyed the concert and thought they were really talented and was really impressed with them.

I was disappointed though last night because my team The Wests Tigers lost to the Bulldogs, they played well but both teams seemed to make lots of mistakes and the Bulldogs are such a big team compared to the Tigers. I hope that they can come back from that little disappointment and win next. Go the Tigers!

I woke this morning and I could not bend my left knee at all it was like it was fused in one position and it was painful. I had to take panadol and have it massaged and it was still not right, I had trouble getting dressed and could not stand at all as when I did the extra pressure made it excruciatingly painful. We went to running training as Mum thought the sunshine would help it and amazingly it did as the sun warmed my knee it started to loosen up and then I was able to bear bending it. It is still a little stiff and painful but it is a whole lot better than this morning. Usually it is my right knee giving me grief, I have not had too much trouble with my left mainly during chemotherapy it was painful.

I have been typing signs up for my paintings for the book launch and practising my speech, I hope it will sound great on the day. It is all getting so close only four more days, that is very exciting and I can hardly wait. All the special people who have travelled my journey with me and those who have been so extraordinary in making my dream of a book a reality will be there. Some special people are not able to make it but I know that they will be there in spirit.

I saw on the 7pm project that Julie Goodwin who won Master Chef is the top selling Australian author at the moment with her recipe book, it looks really lovely and she is so happy, it is a dream come true for her. I wonder if my book could be the top selling book in Australia, to have my story being read by so many people would be incredible and the more people that buy my book then more proceeds go to The Brain Tumour Fund.

Now for some magnificent news, two boxes of my books, that is sixty books were delivered to us late this afternoon. It was unbelievable, I was so excited and they look fantastic, I took some photographs of me with them and I have started signing them ready for my launch. It is all starting to hit me that this is actually happening, I can now really make a difference for so many other people.

Speaking of helping other people, we had a telephone call from Brain Tumour Alliance Australia they only formed in 2008 and they have had calls about my book and where to get it, they are very excited about me raising awareness aboutBrain Tumours because it is often the forgotten disease and they think that I can make a difference. That is exactly what I am trying to do and maybe now people will think to raise funds for Brain Tumour Research when they are holding events.

ONLY FIVE MORE DAYS UNTIL MY BOOK LAUNCH

15th and 16th April 2010

As I sit here and type this I am feeling really exhausted and my right knee and ankle are so sore and swollen and I don't know why.

Yesterday was a fairly quiet day at home, we had our Parish Priest Father Mark and Fiona his associate visit us and we had a little Mass and then Father Mark anointed me with oil and gave me a blessing and we had communion. I can not always go to Mass because we normally go on a Sunday night but I am often too tired to go, so it was extremely nice of them to make a visit to us.

I have now finished off all my paintings for the launch and have put a picture of them on this Blog entry. As you can see they are all very different and special, they are going to be auctioned at my book launch next Wednesday and I am donating 100% of the sales to the Brain Tumour Fund. The painting with the wand is called 'Hope is like a magic wand', the one underneath is 'Our path in life', next is 'Hands of Hope', then 'Bring your own sunshine', followed by 'You have to go through a storm to get to a rainbow', then there is 'The strength within your heart', then 'Magical Dreams' and last is 'Eternal like Stars'. What do you all think of them?

I helped make vegetable slice for dinner, it is really delicious and good for you because it has healthy vegetables in it. Then we went to running training, it was a bit chilly and I had a bit of a sore throat so I sat in the car with Mum and did some Sudoku puzzles.

With the cold my right knee and ankle became sore and stiff even though I have religiously done my exercises and when I tried to do a little walking, which actually is not very far at all I found myself toppling over again.

I woke several times during the night with stiffness and pain and also I had that dreadful nightmare again when Mum leaves me and even though I call her she does not turn around and I am behind a door but it isn't dark it is very bright.

I woke feeling a little tired because of my terrible night sleep but I was excited because I knew we were going to the shops today to get some things for the book launch. We have not been to the shops for ages and I like to look around especially at all the clothes. I love the girls clothes at Myer and they have some really terrific clothes in girls size 8, I like Origami and Cinnamon brand clothes the most.

When we arrived at the shops we discovered that the car park we usually park in had been closed because they are doing renovations and building at the Mall so we had to park in the overflow car park which is a makeshift dirt car park so it was a cross country ride across to the shops. The shops were pretty busy because it is school holidays. I found a beanie kid for $4.95 that is cheap they are usually $11.95 and I collect beanie kids so I was really happy with that bargain. I also got a couple of beanies to help keep my head warm with this colder weather and I found the perfect dress to wear to my book launch, I won't tell you what it looks like you can see it in the photographs from the launch when I post them.

After shopping we came home and I sprayed my paintings with a special gloss spray that protects them from dust and other marks. We had a call from The Starlight Children's Foundation about my book launch, they are very excited and they are hoping to also use my launch to promote their Starlight Day. I think it is a very good cause because they give ill children special wishes and they also run programs in the hospital if I could I would raise money for everyone but I am using my book and many other things to raise money for Brain Tumour research because for me finding a cure and treatment that has less severe side effects is the most important issue in my life at the moment.

Nalani was like a maniac all day as she is going to the Short Stack concert tonight with her friend Catrin. Nalani is such a lucky girl and she is also going to get to meet the band, she had all these questions she practised asking Jarrett and I but I bet when she is there she won't ask half of them because she will be over excited. It is a very special surprise for her from Paul who has been one of the amazing people behind my book and his son is a touring member of the band, how cool is that?

My eyes are starting to open and close and my head drop to my chest so I think it is time to publish this post, snuggle up in bed and go to sleep. It is only five days until my book launch and I need lots of rest so that I will not be tired on my special day.

ONLY ONE WEEK UNTIL MY BOOK LAUNCH

13th and 14th April 2010

Like the most special flower in the garden I can grow stronger and more beautiful every day and like a sunset I can add brilliance to every place.

We had an exceptionally cold night overnight and I had woken during the night feeling cold and once you are cold not matter how hard you try it is difficult to get warm again even if you have cuddles and hot water bottles. In the morning when I woke up again I found that my right knee and ankle were so sore and swollen this is so frustrating and the worst part is, is that it makes doing my physiotherapy exercises really difficult and they are what will help me gain more strength.


Nalani and Jarrett had haircuts today and as I sat in the hairdressers watching them having their hair cut a wave of sadness came over me, it has been so long since I have had my hair cut and it will be a very long time before I have one again. I felt like crying but I had to hold it in because the people in the hairdressers would not understand. I think I have said before that I have some hair growing back, some parts are thicker and some are extremely thin and then I have these three large bald patches where no hair is in sight. I don't think I am being vain but I miss my really long, curly hair and I used to love having it brushed and have pretty ribbons and clips in it. I can do that with my wigs which are very lovely but it is not the same thing.

After haircuts we went out to Federation Square to the Bead Barn, I am making some extra special book marks for my book launch, they are a surprise so I can't tell you what they look like just at the moment. It had by then turned into a lovely Autumn day so we sat out in the sunshine and had a hot chocolate.

When we came home I received the most spectacular news that made me wish I could jump in the air because if I could I would have reached the ceiling - Gavin had emailed us to let me know that all my books have been printed and they were being delivered to him. I am now a published author, who would have thought this would actually happen? I can't believe it, how lucky am I? How wonderful are all the people who have helped this wish come true? Gavin had even taken photographs of the books being delivered and when I looked at them, I cried with joy. Now once my book is launched next week I can be one small person who can make one large difference through my story.

We had running training in the afternoon and we went around the oval twice and then the weather started to cool down quite rapidly and this made all the bones in my little body ache even though I was all rugged up. I might have to get some thermal gear to keep myself warm in the winter or I am going to be a little ice block.

I also made a delicious Golden Butter Cake ready for my special visitor that was coming the next day. I did Sudoku puzzles and worked on my paintings which are going to be auctioned at my book launch I am hoping to have a picture of them all on my Blog by the weekend so that you can all see them.

Today was when my special visitor was coming when the doorbell rang I was filled with nerves and excitement and in came Tracey Hawkins the children's author, she has written books like Max Meets a Monster and Martha's Journey. Wow, she is so astonishing and was able to tell me so many things about being an author, having a book launch and where she gets her inspiration from. She talked about the different books she has written and I am in awe of her and her stories. She told me I should write another book and thought that maybe one using my poetry and my own artwork would be a good start. I am going to keep in touch with her, how wonderful is that? Tracey gave me a signed copy of her book Martha's Journey and I loved her special message, it said "Dear Dainere, Martha's Journey is vastly different from your own journey, yet you both share strength and maturity others can only dream of''' how special is that, I will cherish the book and words always.

I also had a telephone call to do an interview with 2CC Drive Program, I spoke to the radio announcer he wanted to know about my story and about my book and it was on the radio at 4.20pm this afternoon. It is only one week today until my book launch it will be a day for me to always remember and treasure. I think though that I may get a very tired hand from signing all the copies of my book but boy will it be worth it. I hope that all the 2000 copies will sell out within a month, what do you think? Please everyone buy a copy and help me inspire, give hope and raise those funds for the Brain Tumour Fund.

Tinkerbelle had to have her little operation today so that she will not have kittens. She came home just now with a Certificate of Bravery from the Vet and all the nurses that looked after her had signed it and one of them wrote I love Tink. I think that Tinkerbelle must take after me, being brave at the Vet and with having her operation, I am so proud of her.

My right eye has been flickering all afternoon and I have had a little pain in my right hip but I think that could be because the weather is cooling down again. Take care everyone and thank you again for your positive comments they really do brighten my days.

ONLY NINE DAYS UNTIL MY BOOK LAUNCH

12th April 2010

Last night I woke with terrible knee and ankle pain it brought tears to my eyes and poor Mum had to make me a hot water bottle and rub my knee and ankle. Then Tinkerbelle thought it must be morning time and started to play and it was only 2am!

I think Autumn has hit us now because it was cold this morning, almost time to put our heating on in the house. My head was so cold because I am still waiting for my hair to grow in some places but there is just nothing coming through, I have three quite large bald patches. I wonder if people who are bald feel like I do, I wonder if they have to wear something on their head to bed to keep their heads warm. I think that tonight I will wear a beanie to bed because when your head is cold the rest of your body just can't seem to get warm.

We went grocery shopping this morning and I enjoyed that, I asked Mum to buy some ingredients so I could make little cup cakes and vanilla shortbread. After that we went to Jarrett's podiatrists appointment, I also wear orthotics but I have not had to see them because my feet have shrunk, I was a size 5 now I can wear size 3 and 4. The receptionist recognised me from the paper and she was telling me about her teenage daughter who had leukemia when she was 14 and she is now 17 and really enjoying life. Stories like hers are really uplifting and show you that people can beat their cancer.

Jarrett had to run today and I asked if we could go to school and run the Cross Country course. Mum pushed me around it, some parts of the course are really bumpy and I had to lift my feet off the footrests of my wheelchair as the vibration from the rough surface was making my legs hurt. There are some ditches as well which you have to be fairly professional at pushing a wheelchair to navigate, luckily Mum is a master at it. After we had done two laps which is roughly two kilometres I asked Mum if I could practise my walking on the oval which is where the finish line is and remember that a goal I have set myself is to try to walk the last one hundred metres of the Cross Country Course. The grass is thick and uneven and I was very unbalanced at first but Mum gave me support on my right side and helped me and then I could balance. I walked about eight metres but then I was in lots of pain and was very wobbly, even though I was wearing my brace so I decided not to push as I want to be able to do the actual Cross Country. I really think the weather affects any weak area on a persons body. I felt a little disappointed it was not further but I was still proud that I walked that little distance and next time I might be able to walk further and that would be a personal best.

I then continued with my paintings, which I have said previously I am very excited about because they are all so original. We also played a game of Upwords which as you know I really enjoy doing. I also did some more of my knitting, I am knitting a scarf now for Theodore his scarf is all faded and worn, it faded when he came and had radiotherapy with me, it only has ten stitches on it so it is much easier to do than mine with the forty stitches.

Luke sent us a few of the photographs that he took yesterday to have a look at, they all looked magnificent, I really liked one of me that was in black and white and close up. Guess what?, there was also one of Tinkerbelle and she looked so cute. I am really glad that we met Luke because now we can have some photographs to remind us of that special day.

Tess has been working so hard on sending out invitations and organising lots of other things for my book launch. I can't believe it is getting so close, I really hope that I can sell all two thousand copies and maybe have more printed. I so hope people will want to read my book and at the same time enjoy reading it.

Quite a few people from interstate let me know today that they watched the Stateline program online and were really moved by it and commented on how beautifully Chris had told the story, I am so grateful to him, he is a very special person. Lots of people have said that they cried, I cried too. When children have cancer it is so awful because they are only young and have not yet got to live very much of their lives. I hope to live for as long as I can so that I can keep helping and inspiring other people.

PHOTOGRAPH DAY

11th April 2010

On a blustery, chilly Autumn day I was so excited because Luke from one fine day photography was coming to take some family photographs of us, thanks to Carol from ABC. Luke arrived and he had a cup of coffee and a chat with all the family and he was really nice. Then it was time to have some photographs taken, we have some nature parkland nearby so that was the perfect location for the photographs to be taken. The first photographs Luke took were of all of us with me sitting on a chair, then we had some taken of us sitting on the ground because I don't have a lot of fat on my bottom and I was sitting on a rock, it hurt a little bit! We then did individual shots, I was able to stand leaning on a tree for mine, it was a bit weird to stand on my own with only a tree for support I felt really off balance but I was determined that I was going to do it and it was fun. We then came back home and had some more photographs taken, I even got some done with Tinkerbelle and Theodore which I was very happy about because they are both really special to me. Luke was really lucky because he was the first person other than Mum, Dad, Nalani, Jarrett and I to see the digital copy of my book in our house. Having our photographs taken was so wonderful and they will remind us of how special being a family and treasuring every day is.

In the afternoon the weather had become worse so we watched a DVD, I worked on my canvases and we watched the Panthers versing Roosters game on television. In the footy tips this week I am doing really well, I have only got the Storm game wrong so far so that only leaves the Eels versing the Raiders to go I tipped the Raiders to win so hopefully they do. The Wests Tigers won again this weekend, they are on fire, especially Benji Marshall who seemed to inspire the team again this week.

With the weather turning cooler my right knee has a throbbing pain continually and it is also very swollen. My poor little head with its lack of hair gets really cold and my scar gets shooting pain in it also, so around the house I wear a beanie to try to keep my head warm.

It is school holidays now so I can spend lots of time with Nalani and Jarrett and preparing for my book launch. It is now only ten days away and I know that it will be incredible, I can hardly wait.

A gigantic thank you to all the people who have been leaving me such encouraging comments, I truly appreciate them. I hope that every day the sun shines upon you all and brightens your life in so many ways.

THE REST OF MY EXCITING WEEK

8th to 10th April 2010

After my exciting two days with Chris and his crew Thursday seemed extremely quiet but it was a day that had some high points and low points. I had physiotherapy with Rhiannon and after loosening my extremely tight muscles, especially my hamstring she gave me my new exercise program. The exercises she has given me involve a little more weight bearing, I have to start my program by warming up on the exercise bike for up to five minutes with no resistance then I move onto doing wall squats, these are quite difficult because I have to stand with my bottom against the wall with my feet hip width apart and slide down the wall, I can use Mum for support and I have to be careful not to have my knees over my toes. My next one is wall push ups these are pretty cool because I face the wall and use is as support with my hands out wide, I have to put my elbows out like chicken wings which means they have to be up high and out to the side, then I bend my elbows and push up against the wall. My favourite exercise is the abdominal crunches where I sit in a chair with a yellow theraband (these are special stretchy elastic strips) and I wrap it around the back of the chair and I hold onto the ends of the band and cross them across my chest and then lean forward, this one helps to build up my core strength. I also have to do calf raises either seated or standing if I can and then shoulder presses using a 500g weight in each hand. These exercises are more difficult and I find they really exhaust me but I am determined and I am trying to push through the fatigue and pain but I do have to keep an eye on my knee because if it is too painful or swells too much I have to stop. I also have a goal chart which I can write when I achieve the goals that I had written for Rhiannon the time before, she has also written some goal aim dates, one is to be able to ride the exercise bike for five minutes all the time and that aim date is 10th April, I think I will be able to achieve that one easily. I have to try to walk unassisted twenty metres on 1st May and to be able to turn 180 degrees in two steps by 8th May, I really hope that I can achieve these goals and as you already know I am one determined little person so I am positive I can do it.

We received my neuropsychological report today and that was not too encouraging, it appears that the severity of my tumour and the intensity of the treatment have left me with serious cognitive (which is the process of getting knowledge) learning difficulties. This will make it difficult for me at school with my learning and I will struggle to manage the Year 7 syllabus (which is what you learn in Year 7). I missed virtually a whole year of school last year and because I am still so fatigued from my treatment this year it is hard to do everything at school however the assignments I have done I have done extremely well in my Science project on Howard Florey when I interviewed Jarrett and he was Howard Florey I got all excelling , I was so thrilled and I thanked Jarrett because he was such a great actor in it. In my Life Pathways and Social Futures tasks which I did the large booklet with the photographs of things around school that make it difficult for a disabled person I got five excelling and one highly competent. These were projects that I had to research and then write about and then present the way I thought was the best. So even with my cognitive learning difficulties I can still rise above that problem in some areas and achieve amazing results.

We went to running training in the afternoon but it was fairly cold and I had been having a bit of pain in my knee from physiotherapy so I sat in the car with Mum and did some knitting, I am knitting a rainbow scarf to keep my neck warm in winter but it is slow because my hand muscles get so tired but I will get it finished.

Friday I went to school and I had to do my habits of the mind presentation with my group, we put together a large book for children with little stories that helped explain the habits of the mind, we had also done photographs but some of them did not turn out and some that we took earlier were somehow lost on the computer system, maybe they were not saved properly. I think our group did a fantastic job. Then everyone started presenting their scientist projects and mine was first, I felt really nervous and hoped everyone would like it and I am so glad they did, some girls in my class even asked me if my brother did acting. Even though I did not have to do writing at school, I felt very tired because it is often really hard to listen when people are doing their presentations because of my hearing impairment, I have to strain to hear and often I could not hear what they were saying which is sad because I what I could hear was really terrific.

In the afternoon we had a meeting with my teacher and the Deputy Head of Middle School and we talked about how school was for me this Term and what is important for next Term. I am still going to continue with the five day fortnight. I am going to go on a Monday at the start of school so I can go to Chapel and then - wait for it, I am thrilled - I am going to do sport, I love sport and it will help me with my rehabilitation, because it will help me strengthen my weak and wasted body and may help me become mobile again. My not being able to hear in the classroom is a huge issue and because I am not seeing Australian Hearing until 2nd June we discussed what we might be able to do and they are going to see if they have some sort of microphone system that can be used until something more permanent is sorted out. It is so wonderful that they are going to so much trouble just for me but they also said it could also help other children concentrate better in the class. School will continue to be a huge challenge for me and after receiving my neuropsychological report it is not going to improve but as long as I can achieve in some areas and I can enjoy my school life that is what is important.

An exciting piece of news that I was told in the meeting was that the school are organising a walk-a-thon later in the year to raise money for the Sydney Children's Hospital Brain Tumour Fund. I am so grateful and excited about this and hope that I can find many other ways to raise more money and awareness about Brain Tumours. I am not a celebrity but I hope that I can raise huge amounts for the Fund, my book is a terrific start, I have had a garage sale, sold paintings and have collection tins and I would like to be able to do huge events like what people are able to do for Breast Cancer. Wouldn't this be just unreal and how many lives could it change?

I did another canvas painting and started on the background of another one I am so pleased with how beautiful they are turning out, I have used quotes from my book with a picture so they are really unique and special.

Nalani, Jarrett and I had to have our flu injections in the afternoon, Mum and Dad were supposed to have theirs also but there was a mix up at the doctors and the one for Jarrett (because he is a severe asthmatic) and I (because I have cancer) were accidentally used. Mum, Dad and Nalani had bought theirs from the chemist a few days earlier and the chemists had sold out and were waiting for new supplies, so Mum and Dad gave up theirs for Jarrett and I as they thought at this stage we were more important than they were. Hopefully they can have theirs at the end of next week. Injections are so easy for me, I don't even flinch, I could just feel a little sting at the end when it was being pulled out.

At 7pm we all sat together as a family to watch Stateline on the ABC. The story was incredible, Chris told our story so beautifully and as I watched it I felt tingly all over and my stomach was fluttering and then as the story went on we were all in tears. I can't believe what has happened but as I have said so many times before I am sure it was for a reason and no matter what lies ahead I will be strong and brave and try to inspire other people. They said I was really selfless but I just want to help other people especially children going through what I have had to, it is such a terrible and difficult journey and it is so hard to live each day knowing you have cancer when you are only young. I also hope that I can inspire everyday people to appreciate what they have in their lives because you don't know when something terrible like this could happen in your family.

Maybe it is all the excitement or perhaps I am really tired because I have been working really hard on things for my book and the launch but I had lots of trouble walking today I took two steps and I toppled over to my right side, I just could not balance at all, I also had a little headache it was like a pinging in my head and I was a bit dizzy and had some double vision. That is what it is like for me, I have really great days and then other days some things are not quite right. I move on and don't worry about it, I think when things like this happen it makes me stronger and more determined.

Today was a stunning Autumn morning and we went to running training, walking and appreciating nature is so relaxing. I am still very off balance today but I know that I can overcome this. I finished another painting, it looks amazing. I also bathed Tinkerbelle because she has to have her little operation next Wednesday so she can not have kittens. I bought her a little toy to take with her, just like I have Theodore she can have a special little soft toy to help her through her operation.

Tomorrow we have Luke the photographer coming to take photographs of our family, that will be very special also, I feel so lucky that some very wonderful things are happening for us at the moment. I love my family so much, I just want to hug them all the time they have helped me to have courage.

The invitations have gone out for my book launch and I am hoping that most of the people can come and share this special day with me, so many of them have been there for me from the beginning of my journey and others have been the ones who have made my book a magnificent wish come true.

'It all starts with a wish, the wish becomes a step, then it turns into a path and then it leads to the most beautiful dream in the world, a dream come true'

PROMOTING MY BOOK

5th April to 7th April 2010

After such an amazing day on Sunday I still had the hugest smile on my face and a warmth in my heart on Monday. It was a much quieter day which I found my photograph in the Canberra Times at the Raiders Game with a heading 'Little Fan shows Tigers what it means to fight' and boy did they fight back, I am hoping that they will fight all the way to the Grand Final, how wonderful would that be?. I don't think I am anyone special though I am just a girl who wants to help as many people as I can through my story.

I did some more painting because I am doing some canvases for my book launch, I think these are some of the best ones I have done so far. I rode the exercise bike but could only do it for five minutes because my chest became very tight and I had trouble breathing. The chemotherapy affected my lung function and of course my fitness level so I will have to remember to use my asthma puffers before doing exercise. For some reason today also my knee looked like I had played in the Tigers and Raiders game and been injured in a tackle, it was huge and swollen and so painful and I had trouble even bending it.

I did my mathletics and was very pleased with myself because I gained another bronze certificate, I think doing mathletics has helped me stay up with my mathematics especially last year when I spent most of the year in Sydney. Your mathematical side of the brain is the left side so perhaps that is why I am able to keep up with my class. I also completed two Suduko puzzles and played Upwords as well as a trying my cooking skills on chocolate chip cookies for Nalani, Jarrett and Dad to have on their lunches this week.

I went to bed extremely tired and with my right eye drooping which seems to happen when I get tired for some reason. I woke during the night with really severe, cramping and pain in my legs, back and stomach, Mum had to sit up and rub me, use hot water bottles and give me pain killers to try to help the pain go away. It almost reminded me of when I had my chemotherapy and had similar pain through my legs.

Tuesday was another momentous day because I had the privilege of getting to do an interview with Chris Kimball from ABC Stateline. Chris, Adam and Toby arrived at our house at 1pm and they were just terrific. I was able to read some of my Blog, my poetry, show them my Benji Marshall jersey, talk to them about Tinkerbelle and Theodore and answer some questions about my book and myself for Chris. Mum and Dad also got to talk to Chris and tell him about me, my journey and my book. I think all these memories made me remember what it was like and even though I try to always remain brave and positive when I read my poem, I cried. By telling my story through the media and with my book I can reach so many people and hopefully make a huge difference in their lives and help people understand what it is like for someone my age to have cancer and how we can all make a difference in the future. Nalani and Jarrett came home and some more filming was done and then we all packed up to go to running training because they were filming some more there. Being able to run again is important to me but in the mean time having Mum push me in the wheelchair means so much to me. When Chris talked to me at training he mentioned that being able to walk that last 100m (or at least some distance) in our School Cross Country is one thing I am doing for me, you know I never thought about that before, doing that is a goal I have set myself and if I can do it, it will be wonderful and show people that when you are determined you can achieve just about anything. We had fun going around the oval in the wheelchair at running training and it makes me feel like I belong.

We received an email from my oncologist today and he is going to write a supporting document towards my application for being classified as a disabled athlete. This is another way that I could inspire other people not to give up and think you can not be a part of activities you did before you became ill.

I had terrible pain in my scar on the top of my head, if you feel your head at the top there is not much skin there and when it was cut there to let out the excess fluid around my brain there was some nerve damage done and it has given me a lot of grief lately and it seems to be swelling also. We will have to mention this again when we go back to Sydney in June.

What a huge day I had again today but I feel so fortunate to be meeting so many amazing and considerate media people. They are all so interested in my story and my book and it surprises me.

Today I went to school and finally was able to do my art again and Chris, Adam and Toby were there to see me working on it and share it with me. I found out that my fabulous art teacher is leaving at the end of Term which is really sad, I have learnt many new ideas about art from her. We thanked Chris and his team because they have been with us for the past two days and I feel like they are now a really important part of my journey, thank you guys, I hope to see you again at my book launch. The story will be on ABC Stateline this Friday night.

When we arrived home from school the most spectacular parcel arrived in the mail for me, a copy of my book! There it was, I could hold it in my little hands and there was my name on the front cover which Ben did such an astonishing job on. We spoke to Gavin and I thanked him and talked to him, it will be so exciting meeting all the people from Sydney at my book launch that have helped make my wish come true, I don't know how I can thank them enough. I can hardly wait until all of you can read it, it is so different to the Blog because you can read over parts again and again and you can curl up with it in bed or on a couch and there are colour pictures in it also. I hope you will love it as much as I do and I hope that it will touch you and inspire you when you read it. I also found out that the imprint is all done and that the printing of the book is all about to happen - how phenomenal is that?

I still have some more adventures this week with physiotherapy tomorrow although as it is raining in Canberra it really causes my knee to play up so I am hoping that I can still work towards my goals without too much difficulty. Friday I am going to school and it is a mufti day and they are raising money for breast cancer and prostate cancer which I will definitely be supporting and we are having a meeting with my teacher at school to plan for next Term, Saturday is running training, Sunday is running training and then we are having our photographs taken by a professional photographer from Newcastle thanks to Carol.

My Nana sent me an email and in it she wrote this - 'Cancer is like a thief in the night, it comes and takes away things that are precious to us'. How true is that? Once you have cancer your life and the lives of those who love you are changed dramatically forever.

MEETING BENJI MARSHALL

4th April 2010

Happy Easter everyone. This morning I woke up feeling so excited because today was the day of the Canberra Raiders playing my team the Wests Tigers. But before all of this the Easter Bunny had come over night and left us a Lindt chocolate bunny each. We then went to running training and went for a walk around the AIS, I was tingling with excitement because I would be at the game in the next few hours.

When we came home I eagerly changed into my Tigers gear which was Orange Jeans, My 2005 Wests Tigers premiership T-shirt and My West Tigers jacket. The time then seemed to go really slowly, which seems to always happen when you are always looking forward to something. Finally with my Tigers flag held tightly in my hands it was time to go in the car and head for the game.

We met Kate who is the Marketing Manager for the Raiders, she took us to the room we could watch the game from and told us she would come and collect us when it was time for the toss of the coin. The reserve grade teams were versing and the Tigers won it, so that was fantastic! Kate came and collected us all to take us down to the tunnel where the toss of the coin was held. I got to meet Alan Tongue the Raiders captain, he is so nice and friendly, then Benji Marshall and Robbie Farah came, Benji Marshall gave me a humongous hug which was so cool. I then had to choose heads or tails for them and I chose heads and the coin landed on heads, Benji Marshall was so thrilled that I had won the toss for them and he gave me another gigantic hug. I wished both of the teams good luck and we headed back to get ready to watch the game.

Tess arrived and told us that her niece was going to come with her for this special day but she had cut herself and was at hospital. She has to have microsurgery to repair the damage, I hope she will be okay, I will say a special prayer for a quick recovery, she reads my blog all the time and it would have been really terrific to meet her.

The players did a warm up on the field, some of the stretches they did were like ones that Jarrett and Nalani do before and after they run. It was then time for the whistle to start the game. I felt really nervous because I really wanted the Tigers to win, I wonder if they felt the same way I did? In the first few minutes of the game the Raiders were strong and were all fired up and scored the first try, it was converted and the score was 6-0. The Raiders continued to dominate the game for most of the first half, by half time the score was 22-10 in the Raiders favour. One highlight from the first half was in the dying minutes when Benji Marshall scored a try, it was so great that he did that. Lots of people around me thought the Raiders would easily win it, but I have faith in my team and I knew that they would come back!

After watching some enjoyable half time entertainment it was then time for the second half of the game. It started fast and fiery and looked like the Raiders would pick up where they left off however a few mistakes and some great play from the Tigers saw the score become 22-22, then Robbie Farah scored a field goal and the score was 23-22 I felt sure then that the Tigers were going to win. The lovely Kate came and took us down to the tunnel again and we were able to watch the last minutes of the game from the mouth of the tunnel and that was so awesome. The Tigers scored two more tries including one right on the final hooter and I was cheering and a picture of me was on the big screen, the Tigers won the game 35-22. Benji Marshall scored 16 points in the game, he always gives 100 percent when he plays and shows courage also. It is sad that the Raiders lost because it was through their kindness that I was able to go to the game but I was ecstatic that the Tigers won. I was then taken to the field to present the trophy. I shook Alan Tongues hand and told him that it was a good game, I think he is a very nice and genuine person and then Benji Marshall came over and I gave him the trophy and said "congratulations, you played well", he did a little speech and thanked me for being there. I gave him a special gift it was a special bear that said 'You're a champ, You're a champ! You're number one to me, you always give 100 percent to be the best you can be!' I think he really liked it. He is so wonderful because he took the time to think of me when he did his speech and he made me feel special.

After the game was finished and the players had been in the change room and done their after game winning chant, Benji Marshall came out to see me and gave me one of his game jerseys which he had signed with the words ' To Dainere, Lots of love ( with a love heart) Benji Marshall. He told me that winning the toss was lucky for them. He gave me another hug and then went back into the change room. Dad got to go in the change room with my Tigers flag and he was able to get some signatures on it. When the bus with the Tigers players on it was leaving the ground I got to wave goodbye.

I also was able to meet some of Tess's family today at the game, they are all very friendly and kind just like she is and it was so nice to be able to have a chat with them. I was also able to see Mark the camera man again, he is a huge Tigers fan also and he got to meet Benji Marshall who signed his cap for him. I am glad that I can share some of the special things I get to do with other people.

Today was the most extraordinary, unbelievable, awesome and wonderful day that I have had for such a long time and it is a day I will remember for the rest of my life. I had to write it all down tonight while it was fresh in my mind. I am so tired now as it has been a huge day, I think I will go to sleep with the biggest smile on my face and I think it will last for days to come.